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It’s Time For Autism Research To Do Better By Autistic People

Photo: Charlene Croft | Creative Commons / Flickr [image: hand of a person with light skin arranging long red, green, and yellow construction blocks in a line.] Shannon Des Roches Rosa @shannonrosa Autism research is mostly failing my teenage son and his autistic community. Saying something so forthright may seem harsh, but this is the Greta Thunberg era—and we’re now telling people what they need to hear, not what they want to hear. I’ve been going to autism science conferences and scrutinizing autism research for nearly a decade, and during this time most autism studies have remained mired in areas like causation—a pursuit that does absolutely nothing to improve the lives of autistic people who are here already. Even more frustratingly, when research does address the needs of existing autistic people it does so with the goal of “intervention,” rather than focusing on quality of life, and largely neglects those…

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On Autistic “Super Powers”

Greta Thunberg by Anders Hellberg | Wikimedia Commons [image: Greta Thunberg, a white Swedish teen with long light brown plaits, standing outside a building holding a large hand-painted sign reading, “Skolstrejk för klimatet,” or, “school strike for climate”.] Marie Porter  www.CelebrationGeneration.com All of the people who think Greta Thunberg is a “mouthpiece” or “being exploited” have SO OBVIOUSLY never tried to get between a teenaged autistic and a special interest of theirs… much less a special interest involving the well-being of others.#ActuallyAutistic — Marie Porter 🇨🇦 (@OverlordMarie) September 17, 2019 Recently, there has been a lot of chatter on #ActuallyAutistic Twitter about the use of the term “super power” with regards to autism, and specifically by Greta Thunberg, who recently said, “Being different is a super power.” As usual, I have some thoughts. First off, I want to acknowledge that not every autistic is going to see their own autism as a super power. The…

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You Can’t Have Neurodiversity Without People With Intellectual Disabilities

How The Self Advocacy Movement Is Integral to the Success of the Neurodiversity Movement Ivanova Smith. Photo courtesy author. [image: A Latvian-American person with short dark hair and glasses. They are smiling and posing near a house on a shoreline, at dusk.] Ivanova Smith @lauralovesian1 With all the anti-neurodiversity stuff going around right now, I’m going say this: Intellectually disabled (ID) Autistics have been left out, that is true. But how? When people want to take away forms of communication like Facilitated Communication (FC) and Rapid Prompting Method (RPM), which is what anti-neurodiversity people want, that is is a form of silencing. That is how autistics with ID have been left, out because their form of communication has not been respected! Saying AAC users’ communication is not real and is fake is what is really silencing people. By not supporting behavior as communication, that is how people are being silenced. By…

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Dangerous Assumptions

Photo © Lucy Downey | Flickr / Creative Commons [image: Two Canada geese swimming with a fluffy baby gosling.] Julia Bascom juststimming.wordpress.com There is this thing that happens sometimes. Parent has an autistic child. Autistic child doesn’t speak, or their speech isn’t an accurate window into what they are thinking. Autistic child is presumed to be very significantly intellectually disabled. Years later, a method of communication is found that works for the child, and it turns out that they are in fact very smart. Very smart! The parents are overjoyed. They begin talking about presuming competence, the least dangerous assumption, that not being able to speak is not the same as not having anything to say. They are so, so excited. And they start talking about all the incorrect assumptions they had. If we’d known, they say, we wouldn’t have done X. If we had known they could read, think,…

INSAR 2019: Gender, Sexuality, and Romantic Relationships

Today’s INSAR 2019 Special Interest Group (SIG) on Gender, Sexuality, and Romantic Relationships was led by Laura Graham Holmes and Jeroen Dewinter, and co-led by Anna van der Miesen. Essentially, relationships and sexuality are central to everyone’s health and well-being. But there isn’t enough useful research and materials available fo autistic people of all ages and abilities, their families, and healthcare professionals, and many have expressed the need for research and guidance. So that’s what the SIG leaders and the participants in this well-attended session talked about. Any errors or omissions in the highlights below are on us. SIG participants Sara L, Dori Z, Jac dH, and Christina N, in discussion [image: Four people of varying gender identities and neurotypes, talking at a conference table.] Last year’s Gender, Sexuality, and Romantic Relationships INSAR SIG was about determining the most important issues for the autistic community, in terms of gender and…

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The Meaning of Self-Advocacy

Image © Gioia de Antoniis  | Flickr / Creative Commons [image: Black and white photo of a person with long dark hair holding their arms straight out towards the camera, with palms facing outward protectively.] Mel Baggs withasmoothroundstone.tumblr.com Too often people define self-advocacy in narrow terms. They define it in terms of formal groups like People First or Autism Network International. They define it in terms of the ability to use standard language in a specific set of ways. They define it in terms of a specific method of going through the legal system, or other usual channels, to get specific kinds of things done. These are all valid kinds of self-advocacy, but they set people up to believe that only certain kinds of people could ever become self-advocates. When one inmate in an institution fights back against the staff in defense of another inmate who is being brutalized, this…

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How Does The HCBS Settings Rule Affect Housing and Day Program Rules and Rights?

Painting © Tracy Booth | Creative Commons/Flickr [image: Painting of a tiny home with a red roof with white spots, and a lantern, under a crescent moon] Many of our U.S.-based community members, including parents and caregivers, want guidance and clarity about how the impending Home and Community Based Services (HCBS) Settings rule will affect both adult housing choices and adult day programs. So, we spoke with policy expert Julia Bascom, Executive Director of the Autistic Self Advocacy Network, who explained in plain conversational language how exactly the new HCBS Settings rules will affect housing options, how some common misunderstandings about the rule happen, and why the rule is essentially about trying to ensure adults with disabilities have the same basic rights as non-disabled adults do. Thinking Person’s Guide to Autism: Why was the rule enacted in the first place? Julia Bascom: The HCBS Settings Rule sets ground floor, baseline…